The dad of a severely disabled teenager alleges that he’s having to endanger his health and that of his quadriplegic son after eight years of alleged council inaction. Brian Leveson, 55, claims the family has been waiting an agonising eight years for Haringey Council to install a hoist in the bathroom for their son Zack, 18, who has cerebral palsy.
Zack's baths are especially important due to his double incontinence, but the lack of a hoist means 55-year-old Brian has to physically manhandle his son out of the bath on his own, which he describes as ‘physically and emotionally exhausting’.
The absence of the bathroom hoist has meant Brian has to lift a 67kg ‘wriggling and unpredictable' Zack. He said: “If I’m not very careful, I will hurt my back. It’s a challenge we shouldn’t be having to face.”
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But it's not just physically dangerous for Brian, as if he ‘makes a misstep then Zack could fall back in the bath’. To make matters worse, if Brian is fatigued or when the lift has broken, Zack has to get dressed on the landing outside the bathroom.
He says there’s a hoist in Zack’s bedroom, and in the living room. There's also a lift.
Brian - who works as a training manager and is also Zack's primary care-giver : “When we moved in the place was assessed and those [the hoists and lift] were the recommendations. The lift was installed, and then everything else should have been installed and it wasn’t.”
Brian would also like to wash Zack more than once a day due to his double incontinence, but due to how physically demanding it is, this isn't possible. He also clarified that Zack is perfectly clean, but washing more than once a day would be ideal.
He continued: “It takes a lot of energy to be constantly chasing up the local authority. This is upsetting as a parent because it takes limited time away from what we want to do, which is care for our son.
“There was an agreement to fit the hoists and it [Haringey Council] should be carrying out the work as required. It was made nearly 10 years ago, considering Zack’s 18, that’s half a lifetime.” The Council responded to this by saying that the family asked for adaptations to the bathroom to be put on hold during discussions with the housing association.
Brian also claimed that in April this year, Haringey sent an occupational therapist to his home to fully assess it once again and establish what was required. He says this was followed by another meeting with the occupational therapist and the Housing Association where it was agreed who would pay for what.
However the dad was left fuming after he chased Haringey Council for an update in August, and was allegedly told they needed to send an occupational therapist round yet again to see what was required. Haringey Council has said it was an unfortunate necessity that another occupational therapist be appointed.
Brian claims he was told it was best he and the council ‘try to formulate a plan to progress your bathroom adaptations’ after the original occupational therapist left.
He said this is ‘unsurprisingly typical’ of the council and that ‘this story of a lack of communication is not a new one’. “There’s radio silence from the council until we chase them up and ask ‘what’s happening’,” he alleged.
Brian also said that netting-like material is needed on the side of Zack’s bed to stop him falling out in the night. But a few months ago this became damaged, and the family had to fork out £300 to replace it - and claims he has not been told when they will be reimbursed.
Cllr Lucia Das Neves, Haringey Council Cabinet Member for Health, Social Care and Wellbeing, said: “We have been working hard with the family for several years to arrange and co-ordinate adaptations including installing a through floor lift in 2019 and ceiling track hoists in both the bedroom and lounge in 2022.
“In March 2022, the family explicitly asked that adaptations to the bathroom be put on hold during discussions with the housing association and confirmed this position in February 2023.
“Once given permission to proceed, an occupational therapist (OT) worked with the family to assess what was required in the bathroom and a way forward was agreed in May 2023. Unfortunately, it was necessary to allocate a different OT and there was a delay of a few weeks whilst this happened.
“Despite our best efforts it was difficult to agree a meeting with the family to formulate a schedule of works, which was essential because the equipment requested was not commercially available.
“We acknowledge there was a misunderstanding about who was leading on installing the adaptations, but this did not delay the work being agreed. We apologise for the length of time it has taken to provide new cot covers and we will reimburse the family in full.
“We have been in contact with the family, who have now agreed to meet officers. We are keen to work together to get the issues resolved.”
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